I'm longing, Yearning. Wanting the pieces of the "Old Me" to be back somehow. Even to remember pieces of her. There was a lot about who I was pre-Febuary 25, 2009 that I didn't like. But there was a lot about that Amy Christine that was pretty great too. I haven't been able to grieve for what I lost then necessarily "because I look recovered" and I have this super-woman complex that I can't appear weak. To anyone. Ever. I read an article this morning that expressed similar emotions about my own stroke so eloquently. I loved the way that she expressed her missing memories and thoughts now: "So much is still inaccessible. I do not say things are missing; they are inaccessible". For a long time, partly because I didn't have the language for the event, I would say that things were missing or that they had fallen into the "Swiss Cheese" places of my brain, where I cannot access them anymore. Christine (from the article) helped me to express this idea that thoughts are no longer missing, but just inaccessible. I like that.
It's a long read, but well worth it. (http://www.buzzfeed.com/xtinehlee/i-had-a-stroke-at-33?bffb&utm_term=4ldqpgp#1gzelj5) Since my own Tramautic Brain Injury is something very few people could ever fathom or relate to (especially since mine was without cause, and being so young) this article really hit home for me because Christine understands and gets it. Although our strokes affected different parts of our brains, and she had a PFO (hole in her heart and one could not be found in my body when tested), having someone else express those ideas was a relief this morning. Tears freely came again.
There is SO MUCH about that time in my life that seems like a century ago. A different person even. Having aphasia (word salad when you attempt to speak, your words come out in random order but your brain doesn't compute that it's abnormal). The inability to walk. Talk. Swallow. Short term memory that only last minutes. Constantly feeling like Dory, the fish from 'Finding Nemo'. The inability to do much of anything on my own or independently. Being 28 and at the total dependence of your parents, friends, and nurses to do everything for you. Transfer you to a wheelchair. Take you to the bathroom with a catheter. Rapid weight-loss. A zillion pills and tests performed, usually without explanation. Complete and utter frustration that your body will not communicate with your brain. Being constantly misunderstood by literally everyone surrounding you. Not knowing how to communicate any of those frustrations in a healthy way, and felling completely trapped inside this body and world that should be familiar. Feeling betrayed by what should be familiar. The complete lack and desire to want to do things that used to bring you pleasure. The inability to remember who people were/are. The quest for answers to the illusive WHY that would never be reconciled. Slowly, I regained strength. I gained back my cognition's. The aphasia went away without explanation. I was able to begin to gain weight again. I was able to get back pieces of my memory and bodily functions. How or why those things happened, I will NEVER know. But my personality changed, and became MUCH more introverted and withdrawn. Mostly because I became so afraid of looking like I can't DO life. Can't make it on my own now. Can't... be human. Fallen. Broken. In need of something much greater than myself to fix the mess that I see all around me, every day. One thing I also loved from that article by Christine was that she emphasized that her stroke might be the best thing that ever happened to her. In a way, yes, I have an excuse for my two parts of my brain that are no longer inside of my head from the two craniotomy surgeries, but more than that, I have a reason to HAVE to have grace with myself daily now. I can't do it all. And I have to remind myself of that each and every day, especially when I look in the mirror and "look" alright. My tracheotomy and pic line scars help me to recall that "guess what. You almost DIED 5.5 years ago." Literally, I was on the brink of death itself. Doctors had very little hope for my future, but there was someone with a greater plan than could ever be imagined. NOW THAT brings me back to tears. Yet I "look" normal. Recovered. As if all is well.
I have had to repeat back to myself the mantra "I am not God. I am not in control" ALL DAY TODAY. Because I have needed the reminder that I have done nothing to orchestrate any of these events- nor the redemption of my circumstances since. So although life can feel isolating and alone some days, I am never alone really. I've been provided for every step of the way. That really is a beautiful reminder. Even when I feel exhausted and sleep deprived, I have to remember that there is one who cares for me, my well-being, all of my decisions and my every move. That helps me to relax and have more grace with myself in the day to day decisions that I make. What a beautiful mess. It makes zero sense, and I've become OK without having the answers and living in the NOT YET and the gray areas. I expressed to my counselor today that I like having things presentable, simplified & orderly... and that is not my life. Not now and hasn't for the past 5.5 years with this event and no explanation for it. Having the grace with myself to sit in that tension has become one of the best things for me. To learn and remember that I'm NOT in control. And the control was never meant to be mine to embrace even. That acceptance has been monumental and life-altering. Thanks for letting me ramble about my yearnings to remember and grieve for who I used to be long ago, while embracing all of who is here now :)
Love,
Amy Christine
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